how our lives became filled with Joy
Moms Sharing Miracles is a blog series dedicated to stories of Dayton Children’s patients shared by their moms! If you have a story to tell please email us at firstname.lastname@example.org .
By: Jessica Minor, Joy’s mom
October is national Down syndrome awareness month.
To say that my pregnancy was difficult would be an understatement. I had every awful pregnancy symptom for my first and second trimester. I vividly remember being in the doctor’s office and the doctor asking me if I wanted to do any prenatal testing. I had done it with our first child, but I opted out with my second because I was only 32 years old and in my mind not at any kind of risk. At 20 weeks, I was diagnosed with gestational diabetes, meaning I would have to visit my OBGYN for an ultrasound and weekly monitoring. My pregnancy progressed and at 37 weeks my doctor became concerned about the lack of fluid surrounding the baby and sent me to the hospital for a (repeat) C-section. I think being wheeled into the operating room I was so excited and nervous. I couldn’t wait to have a baby girl!
The moment arrived and she wailed but the doctor immediately said, “I think she has Down syndrome.” I felt like I was falling through space, I asked my husband, “What did he say? Can you see her? Does she have Down syndrome?” He cut the cord and walked with the nurses to the bassinet. He gathered her up and showed her to me. I felt like my heart stopped beating. I could see it in her almond shaped eyes, round face and thick neck fold. I had studied this in school. I had looked at countless pictures of children with Down syndrome. A sob left my body that I didn’t know I could produce. It was a mixture of fear, grief and shock.
The hospital staff leapt into action with my husband following close behind them. As I was wheeled into recovery my husband insisted that the baby remain in the room with us. The hospital was so wonderful doing all of her screenings, first bath and eye drops in front of us. Then she was handed to me. This tiny 5.5lb baby girl. As she nursed for the first time, my husband and I wept together. We had so many questions about her health and future. After an hour, my husband went into the waiting room where our 5-year-old son was waiting with his grandparents. He told him that his tiny sister had arrived but we hadn’t named her yet. He asked him if he had any suggestions, since now he was a big brother. He said, “I think we should name her Joy.” That was it, we named her Joy.
Over the next few days as we began to recover, our family and friends were our lifeline. Everyone took turns taking care of Joy and our family. From my grief sessions with my mom, to my father giving Joy skin-to-skin contact, to my husband’s family taking care of our son and his brothers and sisters giving him a shoulder to cry on when I was asleep. I can never repay the amount of support we had from everyone.
On our last day in the hospital, we were handed a large folder from the National Down Syndrome Society. On the cover there was a picture of a beautiful little girl (pictured right). She had the bluest almond shaped eyes and strawberry blonde hair. Her picture was such a comfort to me, for days, weeks and months I would pull out the folder and look at this beautiful child with Down syndrome and only see her beauty not her disability. And in turn the same thing happened with Joy. She just became my baby, not my baby with Down syndrome.
When Joy was 10 days old we attended our first Miami Valley Down Syndrome Association meeting. We were warmly welcomed and found comfort in meeting other families with children who have Down syndrome. Over the next few weeks, MVDSA supported us with phone calls, letters of encouragement, gifts, meals and books about Down syndrome.
I friended the MVDSA MOMs group on Facebook and instantly found answers to many of our questions and concerns. When Joy was 4 months old, I finally found the strength to post my first picture of her on social media and explained that she had Down syndrome. I asked our friends to consider supporting our family by walking in the MVDSA Buddy Walk ® at the Dayton Dragon’s 5/3 field. Our family and friends rallied around us and we walked with over 60 supporters in our first Buddy Walk ®.
This was our new normal. Joy’s first year was a blur. Dayton Children’s Hospital became our second home. We started with genetics to receive the confirmation that she indeed had Down syndrome. Our questions about how this could happen to us were honestly answered by the genetics department. My assumption that children with Down syndrome were only born to women over 40 years old was quickly disproved. The National Down Syndrome Society states, “Due to higher birth rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.” After our genetics appointments we moved on to cardiology, audiology, and developmental pediatrics. Dr. Kasten, our developmental pediatrician spent hours with us in our first visit. She answered every question that was on our mind and hiding in our hearts. She also has extensive collaboration with our pediatrician Dr. Alonzo Patterson, insuring that Joy receives wrap around pediatric care.
She laid out such high expectations for Joy, that we left her office feeling relieved and comforted. Our tiny Joy began weekly speech therapy, occupational therapy and physical therapy from the Dayton Children’s Hospital rehabilitation department at 4 months old. Joy’s physical therapist, Janet Squires pushed Joy towards every milestone. Together we laughed, cried and celebrated with every achievement.
Joy has had a few episodes with illness where we used Dayton Children’s Hospital emergency room. Everyone from the intake staff, nurses to the doctors took extra care in ensuring Joy was well taken care of and on the road to recovery! Everywhere we turned at Dayton Children’s hospital we’ve had nurses and doctors supporting us, reassuring us and encouraging us. She was ohhed and ahhed over in every wing of the hospital.
Joy was 5 months old when I saw a casting call on Facebook for a national model for Infantino toys. Looking back to the NDSS folder and how seeing another picture of a child with Down syndrome helped me heal I decided to send in Joy’s picture. Infantino cast Joy in the Everybody Plays Campaign in 2013. My mom and I flew to California with Joy for a photo shoot. Joy was featured nationally on the packaging for two of their toys.
Following her trip to California, I was contacted by Dayton Children’s hospital about using Joy in some marketing photos. She and her brother have appeared in brochures, commercials and on the website for Dayton Children’s Hospital. It was my hope that her beautiful face would touch another mother’s heart like the NDSS’s picture had touched mine. My opportunity arrived in 2014 when I met a pregnant mother with a new pre-natal Down syndrome diagnosis. I reached out to her via Facebook and sent her pictures of Joy and told her our story. Later, she told me that seeing Joy’s face and hearing our story was a leading factor in reducing her anxiety during pregnancy. Today, we are the best of friends.
I think the most surprising thing about having a child with Down syndrome was how much love and support we received from friends, family, MVDSA and Dayton Children’s Hospital. Having a child with a disability isn’t easy, but it sure does teach you how to slow down and appreciate the little things in life. Today Joy is 3 ½ years old and she is thriving. She continues her weekly physical, occupational and speech therapy at Dayton Children’s hospital. She is learning to walk, improve her fine motor skills and work on speech as well as demonstrate over 350 signs in American Sign Language to communicate. Joy now attends a fully integrated preschool program. Trust me, in our lives, there is a whole lot of Joy!